Recently I spent a wonderful afternoon sharing stories with friends who are also facing BRCA here in Northern Virginia. As I sat listening to their stories I felt my heart break with as each person shared experiences. So many mothers lost at a young age. Judgement from others as we choose genetic testing and prophylactic surgeries. Surgery complications. Fear. Pain.
I realized when you bring us all together, we have all been through our own special version of hell.
- We have watched generations in our families suffer through cancer…
- We often find ourselves explaining to the outside world why our choices –though agonizing — are necessary for our survival.
- We are asked to fundraise but expected not to care whether this money translates into better options and outcomes for us.
- Even after winning our case in the Supreme court, we are still commoditized and monopolized by a company that never learned how to share.
The other common thread when you hear our stories is that we chose to find out something scary about our future and to deal with it proactively. I started thinking about this. We are lawyers, housewives, moms, entrepreneurs, daughters, designers, artists…and so much more.
But when you put get us all together, we are incredible. We are smart. We are resilient. We adapt.
We have this collective identity as Previvors when you hear our stories. And I’m learning we have something else that is very valuable. We also have data. And it’s this genetic data may be the key to unlocking smarter ways to prevent cancer for our children.
What can we do about it?
I know what I want to do. I want to find smarter and better ways to prevent cancer so that the next generation in my family won’t have to face the same difficult choices that I had to make for myself. I want to prove to the world that our data is more than a just commodity or an abstract concept. Rather, our data is part of our identity. And our identity deserves to be treated with respect….as something that belongs to us. I want to share our data to people who can treat our data with the dignity and respect that it deserves, as we work together to find better options to end our suffering.